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If I Had HIV

1 Dec

If I had HIV or AIDS
would you accept me
talk to me
shake my hand
come to my house
sit next to me in church
eat at the same restaurant
use the same restroom
ride on the same bus
type on the same keyboard
swim in the same pool
work in the same office
attend the same school
because you are afraid
of getting the disease
or think I deserve the disease?

Then you are ignorant
about the truth
about the facts
about me. 

I do not have HIV or AIDS
but my daughter does.
She got it from her birth mother
who got it from a man who lied to her
or who raped her.
With medicine she can live
a long and happy life
go to the playground
go to school
get a job
get married
have children
and put no one at risk.

If you knew she had HIV
would you hug her
hold her hand
change her diaper
teach her in Sunday School
let your children play with her
come to her birthday parties
accept her as you would me?

Don’t be ignorant.
http://www.projecthopeful.org/truth-pandemic

More Testing

1 Nov

While we are making progress on her weight issues, we have some new issues to deal with.  Our daughter’s last two labs have shown her HIV levels are low/undetectable and her CD4 count is great.  However, the last two times other things they test have come back abnormally high or low.  Our PID doctor is now recommending more testing and is sending us onto a different specialist to see what is going on in her little body.  We are a little nervous about some our new unknowns, but we are continuing to look to God for our peace and strength for each day.

I cried when I found out about the need for more testing.  I personally hate that our daughter will have to endure more testing.  She has been through so much in 9 months.  I really hate there is more.   I think the biggest stresser about HIV is probably the stigma, but the number two thing for us has been watching our daughter undergo all these tests and lab work at her young age.  

When they drew blood last time, it took 45 minutes for them to get enough blood.  Our daughter fights and screams the whole time.  It usually takes 3 to 4 people to hold her down.   For some reason her veins are hard to get into and then they can’t get enough blood.  There is a RN at our PID office that is always in tears by the end of it all.  She is so little and so pitiful that it breaks everyone’s heart.   Last time they drew blood out of 3 places and the time before last it took 4 places.  I always end up crying just wishing they could do all the poking to me.  How I wish I could face the pain instead of her.  How I wish she could understand that this is all absolutely necessary and for her good.

HIV and Her Brain

8 Aug

I am still  trying to blog about all we have experienced and learned about HIV in the past 6 months.  Today, I will share some about how our daughter’s brain has been affected by HIV.   We originally assumed that her delays were related to her orphanage life, but both  HIV and orphanage life are probably to blame.

This spring we had to have a MRI scan done on our daughter’s back because doctors thought she might have spina bifida or a spinal tether.  (She did not have either, Praise God!)  Since she was already needing this other scan our PID doctor recommended that we also have a MRI Brain scan done as well since she has so many delays.

What our daughter’s brain scan showed was “white matter changes.”  This is where the HIV virus has affected her brain probably prior to medication at the age of one.  Our doctor told us that “white matter changes” are common in HIV children, but when this occurs there will be some kind of learning difficulties.

We asked,  “Will our daughter have a learning disability or will she have  more profound mental challenges?  Our doctor said that both are equally possible.  She wants to do further cognitive testing in the future when our daughter has acquired more language skills. 

So will our daughter just have problems with higher level learning ?  or critical thinking?   
Or will her learning problems be more drastic like will she be able to learn to read?  or write? 

We don’t  know all the answers.  Our doctor said time will tell.  But she has some learning challenges due to this virus, and living her first two years in an orphanage did not help her. 

And yet delays and all…our sweet little daughter is perfect.  She is fearfully and wonderfully made! (Psalm 139:14)  She is not worried in the least that she is delayed or that she has “white matter changes”.  All she knows is that she now has a momma and dada who love her and are here to help her.

We knew our daughter was delayed at her referral.  We thought sure she would be behind for a while, but she would catch up.  Now we know her learning difficulties will in some form be life long.  And we are ok with that.  God is in control, and we choose to trust him.  He knew this little blessing was perfect for our family.  He knew what knowledge we could handle in order to move forward in faith and adoption her.   And God knew what knowledge we needed to learn along the way.  God is faithful to give us the grace we need each day to move forward in faith and total  joy.

Joy Despite Difficulties

12 Jun

Can joy coexist with difficulties, trials, and struggles?  

The Bible tells us “Yes” and Jesus is the ultimate example. 

Hebrews 12:2 “looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God” 

James 1:2 “Count it all joy, my brothers when you meet trials of various kinds.”

1 Peter 1:6 “In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials.”

So why am I talking about joy in trials?  Well, that is what came to mind when I think about our 5 months home with our HIV daughter.  We have total JOY in our hearts and yet parenting her has had its moments of difficulties.  I hope to share over the next few weeks about some of the challenges we have faced with our precious, positive daughter. 

I want this blog to be open and honest about HIV adoption.  We have had some challenges and yet we are SO GLAD we have adopted our daughter and feel so BLESSED by having her.  We can’t imagine our life without her and her life without us.  So by sharing about our challenges I don’t want to discourage anyone from HIV adoption.  I hope to encourage others who have or may face similar things.

To give you a better picture of our daughter I will share the following: in Jan. our daughter was two and a few months old, she was not walking or talking, barely able to stand, ate only baby food and drank from a bottle.  She weighed only 18 pounds and worn size 12 months clothes.

So aside from her HIV, she is tiny and has developmental delays.  This is where it is tricky.  Does she have developmental delays due to her HIV?  Or delays due to orphanage life?  It is a little like…which came first the chicken or the egg?

I think that her HIV and orphanage life BOTH had a part in her size and delays. (I will explain more about this another post.) This is why I will also share about some of the challenges related to her delays.   The first challenge I will address in my next post is related to medications. 

We believe the way we have found joy in the midst of difficult experiences is by learning to trust God and depend on Him.   Proverbs 3:5-6 says “Trust the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge Him and He will make straight your paths.”

Hair

7 Jun

You probably would think that my biggest daily struggle or worry with my daughter would have something to do with her HIV, but it’s not.   My biggest issue with her is taking care of her HAIR.  I absolutely love her hair.  She has gorgeous curls and her hair is so shiny.  BUT, she does not like me to touch it…let alone comb it or style it.  She pitches a fit each morning and night when I comb it out and put oil in it.  Oh well, she won’t be two years old forever.  When she is older, much older, I plan on trying out some of the hairstyles shown on Shuruba .  They have great how-to videos  if you have a little girl who will let you do her hair.

HIV Adoption Video

18 May

HIV Adoption: Oh Yes You Can!  is a video that had a big part in helping us decided we could  adopt a HIV child. 

It is on Facing Life TV.  Click here and then click on Watch Full Episode Online.

Jesus Still Touches the Untouchable

3 May

Leprosy in first century Palestine was worse than a life-threatening disease – it was known as the “living death”.  Victims slowly deteriorated from, as best I understand it, a bacterium that affected the peripheral nerves.  The obvious signs of leprosy were lesions on the skin.  Eventually, the skin, eyes, limbs and nerves would suffer permanent damage. 

To make matters worse, it was highly contagious.  Lepers were ostracized from their communities for fear of infecting others. They were untouchable.  Leviticus 13:45-46 describes a bit of the Old Testament Law concerning the poor soul who might have leprosy. 

“The leprous person who has the disease shall wear torn clothes and let the hair of his head hang loose, and he shall cover his upper lip and cry out, ‘Unclean, unclean.’  He shall remain unclean as long as he has the disease. He is unclean. He shall live alone. His dwelling shall be outside the camp.”

What a terrible label “unclean” is.  The Jew who had leprosy wasn’t merely diseased, he or she was defiled.  Their very appearance was supposed to serve as a warning to others.  They couldn’t come home.  They couldn’t return to work.  They couldn’t attend worship services. 

Perhaps worst of all, it was the common misconception in those days that lepers were somehow being uniquely punished by God for sins they had committed.  They didn’t understand medicine like we do today so people often equated illness and disability with spiritual punishment.  It didn’t help that on three well-known occassions God did in fact use leprosy as a punishment for a specific sin (Moses’ sister who complained in the wilderness; Uzzah who stabilized the ark with his own hand; King Uzziah who offered incense in the temple). 

Leprosy, then, didn’t merely have physical or medical implications, it had social, relationtional, financial and spiritual implications.   What an awful stigma the leper lived with – alone.  In the eyes of the people he or she was an appalling spectacle.  Someone to avoid.  In the leper’s own eyes he or she was a miserable wretch. 

It was just such a person who approached Jesus in The Gospel of Mark, chapter one.  Such was his desperation for healing and belief that if anyone could help him Jesus could that he fell on his knees and cried, “If you are willing, you can make me clean!”  It was a risky act of faith.  What would Jesus do?  Previously He told His disciples that He had come to preach the gospel, not heal the sick. 

He does just what we hoped.  He was moved with compassion for the man and He does something risky of His own – He touches him.  Jesus doesn’t care what other people will think.  Jesus doesn’t worry about catching the disease. (I wonder if He could have caught the disease if it were in God’s plan.  He was a man, after all, and His body was not sheltered from pain and suffering.)  This may have been the first touch this man had experienced in years. 

Of course, Jesus didn’t have to touch him in order to help him.  Like on other occassions Jesus could have helped from a distance or through a messenger.  All He has to do is say the word.  But He touched Him.  He touched the untouchable. 

Then He healed him, or rather, He cleansed him.  “I am willing, ” Jesus said in reply, “be clean.”  And just like that the leprosy was gone, the bacterium was gone, the skin lesions were gone, his damaged face and hands were restored instantly.  Not only was he physically healed, but this meant he could return home to his family and to work.  The end of misery.  The end of condemnation.

Compassion for those with HIV
Perhaps the closest we can come to understanding the plight of the first century leper is to compare it to the plight of the 21st century victim of HIV or AIDS.  It is worse in Africa than in America.  HIV has treatment as does leprosy now, but without it victims suffer a living death, a slow deterioration and it is contagious (albeit through narrow means). 

Ostracism awaits the woman, man or child discovered with HIV, especially in Africa.  They will be looked down upon.  They will be stereotyped.  They will be stigmatized.  Some will think God is punishing them for sins they didn’t commit.  Its a blessing that attitudes are changing in the U.S. – though maybe not everywhere.   Still, the person with HIV or AIDS is pretty much considered the “untouchable”.  Orphans with HIV are “hard to place” children for this reason.

But, Jesus touches the untouchable.  He still does.  He has compassion on them.  He welcomes them.  He cleanses them.  He restores them.  How?  He is not here on the earth, how does He still touch the person or child with HIV and AIDS? 

1.  Through the gospel.  The gospel is good news for everyone, especially those who feel themselves to be miserable wretches.   The gospel is the good news that Jesus, the Son of God, lived and died in the place of unclean sinners so that their sin could be wiped clean and they could be reconciled to God the Father.  It is the news that by faith alone in Jesus alone sinners can become adopted sons and daughters of God. 

The gospel even takes HIV and AIDS away.  It really does.  Not immediately.  Not in this short life.  But in the next life, the resurrected life, there will be no more such diseases.  Meanwhile, He permits HIV to remain – not in order to punish – but for some good, sanctifying reason.  We may not know why He doesn’t heal HIV now but we know HIM and He does not make mistakes or do things without purpose.

2.  Through us.  The second way Jesus still touches the untouchable is through His Body, the church, the you and me who are Christian.  I’ll skip all the ways Jesus’ Body can and does show compassion to those with HIV and AIDS and go right to adoption.  Adoption is no less than radically touching an orphans life with love and acceptance and real big bear hugs without worrying what othes think or anxiety over catching the disease ourselves. 

When parents bring home a child with HIV they are virtually healing the disease ’till Jesus comes.  With the medical care parents can provide their children, the virus can become “undetectable” in their blood or at least managed.  They can have a normal life with normal interactions and normal ambitions.  They do not have to feel ashamed and will not feel “untouchable” anymore.  Countless benefits await the child brought into a loving parent’s home, not the least of which is exposure to the gospel itself. 

Through us Jesus still touches the untouchable.  Better yet, when a parent cares for a child with HIV we are saying, “They are not untouchable.”  People sometimes want to make adoptive parents out to be heroes but Jesus is the real Hero and this is one attempt to deflect all praise to Him who touched and saved an untouchable like me.

Tell me more about HIV

26 Apr

The following information was a handout from www.fromhivtohome.org.

Tell me a bit more about HIV….

HIV stands for Human Immunodeficiency Virus. HIV makes copies of its own genetic material inside human Tcells.

It then uses the T-cells to make more of the virus. This process destroys the healthy t-cells, destroying the immune system. If left untreated, HIV can progress and develop into AIDS.

AIDS stands for Acquired Immune Deficiency Syndrome, and occurs when HIV advances and weakens the immune system to the point that the body can no longer fight off illness and infections.

HIV is not AIDS. AIDS can develop as a result of HIV infection.
While there is currently no cure for HIV or AIDS, the medications that are now available to treat HIV are highly effective.

HIV is now considered a chronic illness, rather than a terminal disease. HIV+ individuals who are receiving treatment can live indefinitely without developing AIDS.

People who are HIV+ have an excellent prognosis (where treatment is available) and studies now show that they can have close to normal life expectancies. HIV+ children can grow up, go to college, get married, have babies, and have every chance of living a long and happy life!

On treatment, the amount of HIV can be brought so low in a person’s blood that it is considered “undetectable. ” HIV is not an airborne or food-borne virus and dies quickly outside the body.

HIV can only be spread through pregnancy and birth; breastmilk; sexual activity that mixes bodily fluids such as blood, semen, and vaginal fluid; and through blood to blood contact (such as sharing needles).

HIV+ children are not a risk to people around them, as HIV cannot be spread through casual contact. HIV is not spread through hugs, shaking hands, holding hands, coughing, sneezing, changing diapers, sharing or preparing food, sharing utensils or dishes, kissing, sharing office or classroom space, mosquito bites, bathing, swimming or any other casual way. HIV is not transmitted through urine, stool, mucous, tears or sweat.

There are no documented cases of HIV being transmitted in a school setting, childcare setting, or through normal household contact in the home.

With the amazing advances in treatment for HIV, many families find that their primary concern has been the fear and stigma that still accompany the disease.

You can change this by learning more and by sharing what you know!

An individual’s HIV status is protected by confidentiality laws. For more information on transmission, see the Center for Disease Control website at http://www.cdc. gov/hiv/resource s/factsheets/ transmission. htm

www.fromhivtohome.org

It’s Not About You

26 Apr

When I look in the rearview mirror, I realize that the biggest risks were the greatest opportunities. Those were the moments that I came alive. Those were the moments when God set the stage and changed the trajectory of my life.

A year ago we didn’t set out to adopt an HIV positive child.  We were only thinking HEALTHY INFANT.  I didn’t want to deal with any “issues”, so I figured this was the safest route.  When our family was getting shots at Public Health for our trip to Ethiopia, the nurse said, “If you get referred an HIV child, don’t worry about it, I’ll help you get through it.”  I thought that was an odd comment, but it stuck with me.  Shortly after we had sent our dossier to Ethiopia I ran across the cutest little sisters on the Waiting Child List.  The older sister was HIV positive.  I felt like these girls could possibly be for us, but there were a few things that didn’t match up with MY PLANS.  They weren’t infants, one had a disease, and there were two of them!  His ways are higher than our ways and his plans are not our plans.  I went back to the core reasons why I set out on this adoption journey to begin with.  I knew I wanted to LIVE out the gospel for my children to see.  And I remembered that THIS WASN’T ABOUT ME! 

I talked to three families who had adopted HIV positive kids, including a pediatrician and pharmacist.  They all said basically the same thing.  It’s a managable disease and HIV was the least of their concerns.  I’m so thankful that they were a resource and source of encouragement for me.  Our newly adopted girls are a total joy for our family!!  HIV is not something I think about on a daily basis because our daughter does not require medication at this time.

I’m so grateful that I didn’t miss this opportunity to adopt these precious girls.  I’m thankful that I didn’t let fear steal my joy.  And I admire all you mothers who LIVE out the gospel everyday with courage and calling.

Molluscum

24 Apr

I had never heard of the highly contagious virus called molluscum until I went to Africa.  There is no cure for it, but there are homeopathic remedies of one kind or another.  Many children we saw in Ethiopia had molluscum on their skin (faces).  They look like worts and are VERY hard to get rid of, but go away over the course of childhood.  Many parents have had the dermatologist scrape them off which makes the molluscum 10x worse.  Our daughter  had three of them on her foot.  They bothered her when wearing certain shoes.  I’m not a doctor, but I play one at home.  I tried the squeeze method which swelled up her entire foot.  I decided to buy “snake oil” medicine off the internet called Zymaderm.  I’ve put it on 2x a day for exactly one month.  I’ve seen a huge improvement in the size of the virus!

BEFORE
AFTER
It does dry out the surrounding skin.  I’m still using it on her toes.
Our friend, Zymaderm!  It doesn’t burn or hurt in anyway.  And our daughter is ALL SMILES about her foot!